Author Topic: Cindys Nerve Ablaision Experience....11/2010  (Read 57824 times)

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #120 on: February 16, 2011, 05:46:17 pm »
Hi Cindy,
I had that twice last Fall with an OD.   Right after the first visit I had pins and needles in my arm and hand.   They come and go but they are still there and strange thing, whenever I get my blood pressure taken in my right arm at Gtown, I get the pins and needles again in my right arm and hand.

Maureen Moriarity prescribed Myofacial Release therapy for me yesterday.   It won't start for three weeks because the man is out of town.

I hope it works for you.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #121 on: February 17, 2011, 07:22:53 pm »
Oh the things we will try to end this misery.Hope the Myo facial release works for you Meimei.
I went to audio olgyst today....shewants me to try a hearing aid....but the $$$ i can not afford.
She said she didn't detect any fluid in inner ear canal.
Now its of to ENT...otolariangologist. ::)
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #122 on: February 17, 2011, 08:44:52 pm »
i know,  Cindy.   Have you started your treatment yet?

What was your hearing level at the audiologist?   I am SSD and have no hearing for words or sounds but "residual hearing"   I was excited to even hear something  through that ear.  I get sad when I think about it.   I only had a 35dB los before the surgery.   I wish it didn't happen.  The resident told me Dr. Tamargo was careful but the tumor was sticky and he spent a long time tugging on it.   I think we waited to long to get on the schedule from Nov to Jan 12.  I guess in that time the tumor grew some.

Does you insurance pay any of the hearing aide cost?   My only choices are BAHA, Sonitus and TransEar.   I went to the Angie's List on the internet and joined so I got a recommendation of the best audiologist for the TransEar around her.   I just want to get it preapproved.   It depends they say on the precedure code they submit whether they'll pay or not.    Why don't you post something on insurance section of the Forum regarding Medicare.   I'm not on it  yet and stiill have United Healthcare.  

I kind of feel comfortable being SSD and not bothering with the hearing aide at all.   The only time I really need it is when I'm in a restaurant and can't hear what my friend it saying.   I always sit on the end with my friends to the left of my good ear.   It's still not enough.  You really need two ears.    There's a device that my father got that you wear around your neck and have a headset on.  I'll go down stairs tomorrow and see what it's called.  I think it was called teh Pocket Talker and we=as recommended by  his Speech Pathologist.    What hearing aide is your audiologist recommending?

Hugs.
Mei Mei    :)
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #123 on: February 18, 2011, 07:28:53 pm »
he didn't recomend any yet.....i see him wed......just saw the Dr. that does the test.
I have some hearing....no low tones..non existant you kno the rubbing of fingers out side the ear....I do not hear that kind of noise.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #124 on: February 18, 2011, 08:21:10 pm »
Me too.   It's frustrating, but I guess that's the way we are now.   Only thing we can do is to get a hearing aid for SSD.   Just can't have any more surgery so the BAHA is out. 

My neck is killing me. 
Keep rubbing the lidocaine the nurse gave me but nothing helps.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #125 on: February 23, 2011, 08:35:11 am »
I am awaiting call for my next ride in "The Tube of Gloom....ENT wants MRI....Good news is he sees nothing wrong by looking in my ears,nose and throat....hearing is perfect in my left ear...right no high tones..Soooo
hes going to have a look at the insides.
Oh...the frustration is just mounting..
he says if he sees nothing inside....that its most likely post -op BS and take my meds.and try to accept that this happens.He said...You Know...It could be worst.
he asked Do you know anyone that has had an AN removed...I said i know of 4,000 other people that have or have had an AN...and told him of this site and told him to recomend it to all his other AN patients.
Stress is playing a big factor in how i feel day to day...if i have appointments...grocery shopping ect. I can not do anything for most of the day...except that one task...i get all tippy...and the head tremors start.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #126 on: February 24, 2011, 02:29:58 am »
Let me know what happens with your MRI.    Do something to de stress like deep breathing and thinking of the ocean or that island vacation we were all going on with a nice doctor in tow.

I went to the therapist today and fell in the parking lot right in front of a car taking a ticket out of the parking machine.   Got up with the help of an old man before the gate went up and the car started moving.   I'm tipsy from the Oxycontin the Rheumatologist gave me and the Indomethicin new 75 mg SR.  My doctor told me not to drive anymore until this settles down and a decision is made.   He's calling around and the planning is taking forever.

Hugs to you, Cindy.
Try to take it day by day and plan very little each day.   Adjust to your new life and expectations.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #127 on: March 02, 2011, 11:45:21 am »
Tube of gloom tomorow at 11......nausea,dizzy,head pain day today.
just took a short ride.....when i stop my car at the stop sign it feels like i am still moving.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #128 on: March 02, 2011, 10:36:06 pm »
Well the more information the better.   You want to find out what's going on inside there so they can have a better idea to help you.  It's probably going to be a half our.   Try not to drink coffee before you go.   Tod told me to do this and schedule it for earlier in the morning so that you can snooze through the banging noises.   Once I had an 1 1/2  hour MRI of my entire spine.    I actually fell asleep and felt terrific on the ride home.   Well what I am saying is make the best of it.

I had my first myfacial release therapy today and it was great!   He found a block on the side of my neck and worked on it for a long time because it wouldn't move at all it was so tight.   I finally got it broken up.   If this is the first visit with him, I can imagine what 8 weeks will be like.    I also met with the neuronurse practitioner and she took me off the dilaudid and the time release Indo methecin and Valium.   I feel much better just frm the little he worked on.  So happy.

Hope all goes well with you and that you come out of it relaxed.
Me Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #129 on: March 04, 2011, 12:24:41 pm »
Thats great news MeiMei!
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #130 on: March 04, 2011, 02:39:22 pm »
I had another session with him this morning and he pressed on my neck and told me to move my toes forward and move my arms and different positions.   It stung like crazy but after awhile it didn't sting and I fell asleep and was talking nonesense in my sleep and he wanted to know what I was talking about.   It just goes to show you when you release this myofacial pain how incredibly relaxed you get.   Then my session was up and I was so sleepy that I had to go to the cafeteria and rest.  I'm still yawning and sleepy.

Hope your therapy is helping.

Love,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Jim Scott

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #131 on: March 04, 2011, 03:13:12 pm »
Hi, Sleepyhead Mei Mei ~

I'm delighted to learn that the facial release therapy is proving to be incredibly effective for you.  I hope the relief not only continues but increases.

Jim

4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #132 on: March 04, 2011, 05:03:49 pm »
Thanks, Jim!    I just woke up and it was the best sleep I've had in years.   I'm still yawning and don't want to get up.    I feel like a bear in winter bliss!

I recommend myofacial release therapy to everyone of you having these headaches.
Hugs from sleepy land,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

kzanana

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #133 on: March 05, 2011, 04:39:45 pm »
Did they do it in the same area as a nerve block ?? Mine have all been in the neck area. Waiting to see how this works for you. I to have the baseball bat head ache 24/7

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #134 on: March 05, 2011, 09:00:21 pm »
Dear Kzanana,
Are you referring to me ,  Mei Mei?

He pressed first on the right side of my neck below the surgical area and told me to move my toes up and I think to move my arms as he pressed on the lump causing the pins and needles to get worse and worse and then they were going away as he said he could feel the tension in my neck and I couldn't control myself.   I went to sleep and started babbling and he asked what I was saying because he was trying to give me more directions but I got so sleepy.   There must have been so much tension that the need for sleep just came running in.  I waited in the cafeteria and then drove home around noon and then slept till 7:30 pm.  I felt so good and have not had a headache since Wednesday of the first treatment.   There are no appointments with him till the 18th so I'll have to go a week without him   I hope it lasts.

I don't know if Myofacial release will work as well for you, but it has done wonders for me.   Get a referral to someone in a reputable PT place like I have in a large Teaching Hospital.   Make sure they have experience with Myofacial Release.    The other PT practices worked on my for four months total and discharged me ... the second only two days ago saying that PT won't work for my headaches.    Then Michael at Georgetown came along and everything turned around.
I hope you find relief soon.

Hugs   to you,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh